Monday, September 16, 2013

Registry connects families and individuals with Down
syndrome to researchers

The National Institutes of Health has launched DS-Connect,
a Web-based health registry that will serve as a national health resource for
people with Down syndrome and their families, researchers, and health care
providers.

"The Down syndrome community has voiced a strong
need for a centralized, secure database to store and share health information.
DS-Connect fills that need, and helps link individuals with Down syndrome to
the doctors and scientists working to improve their health and quality of
life," said Yvonne T. Maddox, deputy director of the NIH's Eunice Kennedy
Shriver National Institute of Child Health and Human Development (NICHD),
which funded and developed the registry.

Participation in the registry is free and voluntary.
Individuals with Down syndrome, or family members, on their behalf, may sign up
to create personalized profiles with information about their health histories,
including symptoms, diagnoses, and medical visits. The website has been
designed to ensure that all information remains confidential. The site will
separate users' names from their health information, so that individuals may
compare their health information with that of all other participants in an
anonymous manner.

If participants give permission to be contacted, the
registry coordinator can inform them of research studies in which they may be
interested. Results from these studies will help researchers better understand
Down syndrome and how to treat its accompanying health problems across the
lifespan.

"DS-Connect is for people of all ages, not just
children," said Dr. Maddox. "Right now, we don't have much data on
older individuals with Down syndrome, and that's been a problem. People with
Down syndrome are living longer, and researchers and physicians will require
information about the health issues and needs of these individuals to make
recommendations about their health care."

The Down
Syndrome Consortium, a public-private group established in 2011 to foster
the exchange of information on Down syndrome research, will be a critical
player in helping to disseminate information about the registry to the Down
syndrome community. The consortium includes individuals with Down syndrome and
their family members, representatives from professional societies and advocacy
groups, and NIH scientists.

"We've been fortunate to have so many experts and
advocates provide input on this effort," said Dr. Maddox. "The
establishment of this registry is a tremendous step forward for Down syndrome
research, and the resource will become all the more beneficial as more
individuals join in the months and years ahead."